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Author
Topic: Another milestone (Read 9762 times)

It was 24 years ago this month that I learned I was "HIV Positive", which had a different connotation in those days (a death sentence). As I move into year number 25, I have much to be thankful for. I notice that as I get further into my "journey with AIDS", I feel more and more removed from the current HIV mainstream. This was very apparent when I attempted to take a recent quiz in the back of POZ magazine, and felt that none of the answers were applicable to me (it related to disclosure). Disclosure was different in 1987 than it is today, and there's just no two ways about it.

I am learning to accept and embrace the differences in our POZ community, but I do feel that we LTSers seem to have less and less in common with the more newly diagnosed as time goes on. I am not saying this is necessarily good or bad, it's just the way it is (or at least, the way I see it). I'm glad that they may not have to experience the O.I.'s that many of us did -- PCP, MAC, sepsis, molluscum, and many other serious health conditions. And I'm very glad they don't have to experience the heartbreak many of us did at being told to get rid of beloved pets. I wouldn't have dreamed of trying to have a cat back then, but now I can't imagine my life without Maevis and Polly.

Love to all my forum friends,Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Alan- Congrats on the milestone you've just passed. I agree with you wholeheartedly about the gap between those of us who are LTS, and the newly diagnosed. It's definitely there, and at times fels unbridgeable. There's really no way to expalin what it was like living in the early years. You just had to be there. Again, congratulations on making it this long, and here's hoping that there's another 25 years waiting f or you

That's just fab to hear that you've passed another mile marker. I concur, it's a bit disheartening when you think about all the things that you endured to make it to this point that todays kids will never be able to relate to.

Just look at it this way: I always say that if and when I ever meet another fellow to possibly date, I don't want to deal with someone who I have to explain to who Donna Summer is OR that the Pet Shop Boys were not the original artists to sing "Go West" lol. That dating thread is in the back of my mind

Glad you're here ~ you always make me laugh whenever I pop in. And we'll all be ready for the party you're having when you hit the next 20+ year marker!

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

I had to verify this was in the LTS section before I commented. The disclosure isse was the first thing that was discussed with me after my diagnosis. It was a private, dirty little secret that was supposed to be surpressed at all costs. I remember being told I could possibly live years with the virus before getting sick. I have a couple of years til I hit this anniversary but congrats to you.

Just like in most aspects of life, the age differences probably play a major role in this disease also.

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but I do feel that we LTSers seem to have less and less in common with the more newly diagnosed as time goes on.

Congrats on 24 yrs! WooHoo! And here's to 24 more!

Have I not given you my explanation about the waves in an epidemic? Those in the first wave got sick and died. Those in the second wave (misnamed LTSers here) probably got sick but had access to the first meds - and so lived. The third wave (who will never fit the definition of LTS here no matter how many yrs they live with HIV) are those who probably haven't gotten sick and have had access to much better meds - and so find HIV much more like a chronic and manageable disease. (In the future there will be a few more waves of those infected with HIV. The fourth wave will be those diagnosed after a vaccine has come to market; and the fifth wave will be those who get infected but take the "cure" and suffer little from having been infected)

Those of us in the 2nd wave do have an overlap of symptoms and issues with those in the 3rd wave; but we are definitely living different lives with HIV. We (those in the 2nd wave) will continue to deal with long term issues of those first meds (like just a couple yrs of Zerit) that many in the 3rd wave will not have to deal with; although perhaps they'll have their own long-term issues to deal (like from taking Atripla for 35 yrs or living with HIV for 50 yrs.)

the fact that at diagnosis those in the 2nd wave were told that they would probably die, versus how 3rd wavers are told that their lives will probably go on a normal lifespan shows the vast difference in the experience between LTSs and those diagnosed nowadays.

Have I not given you my explanation about the waves in an epidemic? Those in the first wave got sick and died.

Mikie, I'm one of those 1st wavers, I've been on Meds since 1990, tested HIV+ in 1987, and survived 21 yrs of pure HELL just taking all those Meds and trying to stay ALIVE, so you see, not everyone DIED during the 1 wave of this, there are still a lot of us ALIVE and well even today

« Last Edit: March 15, 2011, 10:00:37 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Mikie, I'm one of those 1st wavers, I've been on Meds since 1990, tested HIV+ in 1987, and survived 21 yrs of pure HELL just taking all those Meds and trying to stay ALIVE, so you see, not everyone DIED during the 1 wave of this, there are still a lot of us ALIVE and well even today

No, not in my wave construct you aren't. LOL

In an epidemic, the first subgroup from the afflicted/infected people that can be seen separately is the group of people who die because there is no treatment or medication, or much science known about the emerging problem.

in my wave theory, the first wave is comprised of those who died at the first of the epidemic because there were no medications. (so unless you're dead, then you're not a part of this group. LOL) Although my 2nd partner died of AIDS, he died yrs after HAART and he had received medications so he is not a part of the first wave. However my first partner, who took part in some of the first clinical trials that helped produce the drugs which kept me alive, because he died just before the advent of medications, he was part of the ending of the first wave)

the 2nd wave is when science has begun to get a handle on the epidemic and people have access to the first preliminary medications, and so the dying is halted or slowed down. (These are the first survivors. You and I (and all the LTSs) are part of the 2nd wave because of those very first meds we were taking in the early 90s')

the people in the 3rd wave live in a time a few more years and much scientific research down the line. (in these forums this wave is defined as after the implementation of HAART) These people are able to start off with refined treatments and improved medications, and therefore many are able to live lives less affected by the disease and the epidemic.

the 3rd wave of an epidemic encompasses the vast majority of those that will be infected - because their lives are better sustained with the medical/scientific improvements - and this wave usual last for the longest time period. although there is some disparity between those who enter near the beginning of the 3rd wave and those that enter yrs later closer to the end of the 3rd wave (which is when a vaccine is found), the differences within the 3rd are not as apparent as the differences in lifestyle and health between those in the 2nd wave and those in the 3rd wave.

The fourth wave in this epidemic will be those unlucky ones who acquire HIV after a vaccine has come onto the market. Resources will be dwindling at that point as the rates of HIV infection will be falling due to the vaccine usage. And the fifth wave are those who get infected (because they hadn't gotten the vaccine) who can simply take the cure to clear out the HIV.

edited to add:I just realized where the confusion might lie. I base my wave theory on OUTCOME, not infection time. Since HIV can have a 10-12 yr incubation period, and because some are LTNP, there's no clear cut way to define the waves based on initial infection. For example again, my 2nd partner is clearly from the 3rd wave yet he died. Others here, in the 3rd wave, were in a hospital with an AIDS condition, yet their outcome is radically different with those in the first wave, and often very different from those in the 2nd wave.

Milkie that is only your wave theory, sorry but that just doesn't apply to everyone...your lumping everyone into that theory that DIED and you really need to STOP doing that...theories are NOT facts... when I 1st tested POZ in 87 they didn't have any meds, and AZT killed a lot of people, it didn't kill me tho, I remember taking AZT every 4 hrs. and it made me sick as a dog, I lost all of my body hair except my facial hair, and to date, it will never grow back, that is what AZT did to me, it may have done a lot of other BAD things, even my current doctors don't even know, but never-the-less, I survived, and I'm just happy to be alive

« Last Edit: March 15, 2011, 12:01:07 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Milkie that is only your wave theory, sorry but that just doesn't apply to everyone...your lumping everyone into that theory that DIED and you really need to STOP doing that..

sorry you don't agree. (I hope you caught the edit I added to the bottom of that post) I suggest you go read up about smallpox and polio epidemics. They have waves of people afflicted in those epidemics also. It's the way an epidemic works - from those initally infected who sicken and die, to those, years later, who are infected and can be treated by a cure.

We obviously acknowledge this same "wave theory" here by designating those with HIV pre-HAART as LTSs. That definition isn't very exact because it means that some of our members (who were diagnosed and treated in say 2001) will never become "long term survivors" here. According to that very definition, Ann who has lived with HIV for a long time will never be an LTS because she will never be treated pre-HAART. That's just crazy. What we're really pointing out here is that if and when Ann begins treatment, she will be in the third wave because her outcome will be radically different (than say you or me in the 2nd wave) because the meds have changed so much in the last 15 yrs.

read up about smallpox and polio epidemics. They have waves of people afflicted in those epidemics also. It's the way an epidemic works - from those initally infected who sicken and die, to those, years later, who are infected and can be treated by a cure.

smallpox and polio epidemics has nothing to do with AIDS, you have successfully hijacked this thread, so, I have no further discussion, start your own thread, if you want to chat about theories

« Last Edit: March 15, 2011, 12:25:49 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

sure they do. they've all been or currently are epidemics. Along with the bubonic plague and others too. AIDS/HIV is just another one of many - with many more to come - epidemics that have threatened mankind. That's why I can prognosticate about the "future waves" in this epidemic, because I've seen how previous epidemics have been handled with vaccines and cures.

now I'm not creating something out of thin air here. here are some references about epidemics below, many which use math to describe the people affected within the waves/stages of an epidemic and their conditions/qualifications to be in each of those stages/waves/groupings. There's even discussion about how many epidemics also come in "waves" over time or "waves" through specific population groupings. I have just found that my simplified explanation of waves (5 waves of HIV infected/patients) makes it easier to understand why LTSs and "newbies" are so different in their perspective and thoughts about dealing HIV/AIDS without going into all the gory details about past epidemics and wave modeling.

Having lived with AIDS for 26 years and more likely 30 years I can certainly understand where you're coming from. Not only did some of us survive the first wave, living in the 80's we survived permanent waves. I get what you're saying brother.

Not to continue with the hijack, but the "first wave" would be those infected in the early 80's with no available treatments that didn't become available until ATZ was introducted around 1988. A lot of us LTS were on the tail end of that first wave and I had my first AIDS illness in 1991 that would have been fatal just a few short years earlier.

Mikie's timeline seems pretty legit based on my memories.

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Not to continue with the hijack, but the "first wave" would be those infected in the early 80's with no available treatments that didn't become available until ATZ was introducted around 1988. A lot of us LTS were on the tail end of that first wave and I had my first AIDS illness in 1991 that would have been fatal just a few short years earlier.

Mikie's timeline seems pretty legit based on my memories.

Of course more people are going die in the initial stage. They didn't know the cause and there was no treatment. I'm living proof that not everyone infected died during that time period. Who knows, you might have survived your first AIDS illness, even if it happened in 81. I did.

A lot of us LTS were on the tail end of that first wave and I had my first AIDS illness in 1991 that would have been fatal just a few short years earlier.

just like I'm on the cusp of "baby boomers" and "gen X", so I'm on the cusp between the first two waves. Although it saddens me that Randy must have been on a placebo or a non-effective medication in the clinical trial he took part in, I'm glad that I took the AZT and stayed alive long enough for those trials to produce and market those first meds. By the time I ended up in the hospital almost dying from AIDS in 96, the death rate was already declining. Luckily I slid into the second wave by the hair of my chinny-chin-chin or I would have been one of those people I mean when I talk about those in the "first wave" who died without treatment.

I'm very glad to have met many people here who, like Alan, were able to miss becoming one of those early "victims" (I hate that word nowadays but in the early period of this epidemic, I think many people really were 'victims' caught unawares) and to make it through into this group of the first survivors. I had felt all alone in my portion of OH where all my friends and partner were dead from AIDS. I was glad to be alive; but there was an emotional and mental toll to being the only one left. Here, I found many more people who were "left behnd" too and could share in my conflicted emotions about being alive when so many others weren't.

Of course more people are going die in the initial stage. They didn't know the cause and there was no treatment. I'm living proof that not everyone infected died during that time period. Who knows, you might have survived your first AIDS illness, even if it happened in 81. I did.

and that's why I based my "wave theory" on the outcome. The variables to the when and where at the start are obscure. Did someone progess in 2 yrs or 12 yrs? Both can happen. Plus there are people, like you and Ann, who wouldn't fit in a proper category (like a majority of your compatriots would) if it was based on something tenuous like infection date or disease progression. HIV can be very individualized as Den and Dach properly point out; however medical science and treatment have formed a timeline by which we can "group" people based on medical treatment and outcome.

of course things like the start of the epidemic and disease progression are important; but I'm discussing the social construct which follows the shared experiences of those within the framework of a timeline - of those who went untreated, treated by early meds, treated by improved meds, treated by vaccines and cures. So my waves are based on outcomes within the epidemic itself, which can correlate to emotional and mental states along with health status.

1st wave outcome - without meds, people die2nd wave outcome - first meds stop the dying, so people live3rd wave outcome - meds are improved and people live longer and healthier (compared to 2nd wave medical treatment outcomes)4th wave outcome - un-vaccinated people acquire disease and live lives similar to those in the 3rd wave5th wave outcome - the solution is found and those infected are cured and live average lives

and that's why I based my "wave theory" on the outcome. The variables to the when and where at the start are obscure. Did someone progess in 2 yrs or 12 yrs? Both can happen. Plus there are people, like you and Ann, who wouldn't fit in a proper category (like a majority of your compatriots would) if it was based on something tenuous like infection date or disease progression. HIV can be very individualized as Den and Dach properly point out; however medical science and treatment have formed a timeline by which we can "group" people based on medical treatment and outcome.

of course things like the start of the epidemic and disease progression are important; but I'm discussing the social construct which follows the shared experiences of those within the framework of a timeline - of those who went untreated, treated by early meds, treated by improved meds, treated by vaccines and cures. So my waves are based on outcomes within the epidemic itself, which can correlate to emotional and mental states along with health status.

1st wave outcome - without meds, people die2nd wave outcome - first meds stop the dying, so people live3rd wave outcome - meds are improved and people live longer and healthier (compared to 2nd wave medical treatment outcomes)4th wave outcome - un-vaccinated people acquire disease and live lives similar to those in the 3rd wave5th wave outcome - the solution is found and those infected are cured and live average lives

Of course your fifth wave is purely hypothetical because it ain't happened yet. The social construct (whatever that means) you're proposing is too rigid. Way to many people fall into a variety of your "waves" with too many variables to measure, age when infected etc. Too pat. Sorry for the hijack Alan. I'll leave it alone.

Alan, congrats on the anniversary. I am so glad you're with us! I've always had admiration for you, and always will.

Totally agree about the disconnect between LTS'ers and short term survivors (I don't know if that's politically correct or not). Just have to accept they really don't want to know what it was really like, and what we still go through due to living with the virus for so long, and the effects of some of the earlier meds. I do remember being told to give up my cat, because the litter was unsafe, and I'd get toxo.

Again darling, congrats.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I wasn't sure if this was really Alan's thread, what with all the hijacking about HIV wave theory. If a subject is so damn important, and is not part of the OP, then start your own damn thread. I come here to support my friends and I want their posts to be their own, not some platform for other member to talk about themselves.

That being said, Alan, congrats on the milestone and don't let the little people get you down. You know you matter and you have every right to wear the label of LTS proudly. My world has always been just a little bit brighter, because you are in it. Here's hoping for many more milestones.

That being said, why did you contribute to the further hijacking. I usually agree with your philosophy but this just didn't sit right tonight. I normally appreciate your contributions but I feel like I had my contributions diminished.

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

That being said, why did you contribute to the further hijacking. I usually agree with your philosophy but this just didn't sit right tonight. I normally appreciate your contributions but I feel like I had my contributions diminished.

I commented on another example of a thread, began by a poster, that is soon overrun, by having a veritable dissertation inserted, mid post. I just do not understand how another member, can simply hijack a post, because they feel like it. I have had it done to me and I don't like it when it happens to other posters and I will continue to comment on such hijacks, because they are rude to the OP.

If a subject is so damn important, and is not part of the OP, then start your own damn thread. I come here to support my friends and I want their posts to be their own, not some platform for other member to talk about themselves.

hey!

I was allowed to post in this thread just like everyone else. And then some people and I chatted back and forth in this thread, just like happens in threads throughout the forums. I guess the people that didn't agree with things I said should have started another thread rather than hijacking this thread in the first place. (sorry. but I'm just going to keep responding to people IN the same thread as where they are talking to me.)

Besides if you don't like the conversation going on in this thread you have every right to join in or not join it. You don't have the right to pretend to be the "forum police" however and try to deny me my right to post or reply to others in this thread. I haven't broken any forum regulations and have every right to talk to others without needing your permission.

Perhaps, like others who are in disagreement with me or don't like something I wrote, you and those others really should have send me a PM complaining or disagreeing with my postings so we can discuss our differences of experience or opinion (or even reported me to a moderator if my language was inappropriate) rather than hijacking this thread (like you have done to take another unprovoked swipe at me).

I know exactly what you're talking about. I've seen your heart felt posts derailed and I didn't agree with it but mostly chose to remain quiet like obedient sheep. Somewhere in these forums, personalites have become more important than principals. I finally reached out because I needed support and a place to deal with this illness and all the peripheral opportunist diseases, but more importantlly, a place I felt like I could connect with people who are like me.

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

I was allowed to post in this thread just like everyone else. And then some people and I chatted back and forth in this thread, just like happens in threads throughout the forums. I guess the people that didn't agree with things I said should have started another thread rather than hijacking this thread in the first place. (sorry. but I'm just going to keep responding to people IN the same thread as where they are talking to me.)

Besides if you don't like the conversation going on in this thread you have every right to join in or not join it. You don't have the right to pretend to be the "forum police" however and try to deny me my right to post or reply to others in this thread. I haven't broken any forum regulations and have every right to talk to others without needing your permission.

Perhaps, like others who are in disagreement with me or don't like something I wrote, you and those others really should have send me a PM complaining or disagreeing with my postings so we can discuss our differences of experience or opinion (or even reported me to a moderator if my language was inappropriate) rather than hijacking this thread (like you have done to take another unprovoked swipe at me).

Please save me the poor victim routine. You know exactly what I am talking about, regarding your hijacking a thread and then complaining when someone calls you on it. I don't pretend to be the forum police, but I get so sick of going into threads, where you have derailed them once again. As I said, you do in my threads and I don't like it when you do it to others. And FYI, I never come into your threads with the purpose of hijacking them, too bad you cannot say the same.

nope. I clearly was responding to the OP who wondered offhand why there was a difference of opinions between people called LTSs and those newer diagnosed. I simply explained that it's part of the cultural aspect of an epidemic as it sends out ripples and waves as it progresses. I put forth the notion that people who had the lesser quality treatment at the very first of an epidemic and yet were spared because of those less quality treatments (which are the members in the LTS forum) have different opinions and attitudes than the people who had better quality treatment and better prognosis later in an epidemic. Others took issue with those descriptions and wanted to debate it. In your opinion this thread was derailed and in my opinion it was just that part of the discussion wandering around as conversations are apt to do.

And that's what I mean about being the "forum police". Just because YOU don't like the direction of the conversation (and by the way, it was a conversation. My posts were being replied to and I was responding. Where is your complaint with the others that were sending me replies?), but just because you don't like the direction of the conversation doesn't mean that the people conversing are wrong. For example, I'm sure people don't really care to read all this. But once again I'll point out that if you weren't complaining publically that I'm posting stuff you don't want to read (I mean other people were talking to me so they must have been sorta interested too. Otherwise they just wouldn't have commented and my comment would have just drifted away in the thread), then I wouldn't be responding like this, and WE wouldn't be derailing this thread.

And FYI, I never come into your threads with the purpose of hijacking them

I have never entered any thread with the "purpose" of hijacking. If you believe that is happening you should report that situation to a moderator.

However, I usually only start threads in the benefits forum about the horrible ADAP figures or in the activism thread announcing another rally or something (speaking of which - two mini rallies are coming up on Mar 29th and 30th, so if you're in SC keep those dates open and join us in Columbus).

For as often as some people here already attack me for talking about my own personal experiences in various threads, I'm not about to start any public threads about myself or my concerns in "off topic" or "living with" and probably get accosted for my opinions rather than garner the support I would hope for. there are plenty of friendly people here that I chat with in private who give me plenty of support.

Not true. Alan was posting about himself, and you came in with that "wave" theory, so people would de-focus on Alan, and re-focus on you. I agree you should start your own thread, instead of trying to get people to notice you all the time, by coming in a derailing someone else's thread.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Not true. Alan was posting about himself, and you came in with that "wave" theory, so people would de-focus on Alan, and re-focus on you. I agree you should start your own thread, instead of trying to get people to notice you all the time, by coming in a derailing someone else's thread.

so now you're going to tell me what I can and can't talk to people about too? sheesh! you people have some nerve.

Hold off everyone. The original purpose of this thread has gotten lost amidst some theorizing and embroilments over that.

Leather, you've expressed your theory. That's done so let it go now. And others, you don't have to agree with his theory. But that isn't what this thread is about. So let's stop the squabbling right now or some Time Outs are going to happen.

The real point is this thread is about a great member's celebrating having come through and being alive.

Alan, I am definitely glad you are here and continuing to rock 'n roll along. Keep it up, you should excuse the expression.